Roseanne Smith, 54, has one leg the size of an ‘elephant’s’ due to a rare medical condition
A woman whose leg ‘swelled to the size of an elephant’s’ due to a rare condition is now able to walk again thanks to life-changing treatment.
Roseanne Smith, 54, from Plano, Texas, watched in horror when at the age of 18 her ankle and foot began to swell without any explanation.
Doctors had no idea why her limb was rapidly growing in size – and her confidence plummeted when she endured cruel taunts wherever she went.
At the age of 29 she was finally diagnosed with lymphoedema – an incurable condition where lymphatic fluids can build in the arms, legs, face or hands causing them to swell to large proportions.
Her leg continued to grow and was eventually so big she struggled to walk and could not longer hide it under clothes.
Now, after two years of fundraising she has flown to South Korea for liposuction and stem cell treatment.
She claims her leg has already reduced by 50 per cent in size and she has been given a new lease of life as she can bend her knee for the first time in years.
Ms Smith, a hairstylist, said: ‘Over the decades, my leg was getting bigger and bigger.
‘It looked like a tree trunk. When comparing both limbs it was like looking at an elephant’s leg and one of a bird.
‘I’m sure my leg was at least 30lbs bigger than the other and because my left leg is really skinny it stood out even more.
‘In the past the condition ruined my life, it gave me such a bad outlook and left me questioning why it happened to me and why I deserved it.’
At the age of 18 she noticed her leg and ankle had begun to swell – but had no idea her life would be changed forever.
She said: ‘Lymphoedema happened to me overnight, when I was 18, I woke up to see that my ankle and foot had swollen up, you couldn’t see my ankle bone or the top of my foot, it looked like a turtle shell.
‘Before then I was very sociable but after that I became a lot more shut in and didn’t like to leave the house because I was so embarrassed by my leg.
Her confidence plummeted as she avoided leaving the house or desperately tried to cover her leg up with clothes.
She believes her leg prevented her from meeting men and having a relationship.
She said: ‘If I met any boys they would be interested in me until they saw my leg and then would lose interest.
Ms Smith’s leg began to swell at the age of 18 and she was diagnosed with lymphoedema at age 29. This is an incurable condition where fluid builds up in the leg, causing it to swell
After years of barely being able to walk Ms Smith discovered Dr Young Ki Shim, a Korean lymphoedema specialist who promised to be able to treat her leg
She flew to Seoul, South Korea and had liposuction to remove the excess lymph fluid from her leg. She also had stem cell surgery to kickstart her lymphatic system, so it would drain the fluid itself. Her legs are pictured following the treatment
‘Everywhere I would go people would stare, point, whisper and make cruel comments, they would call me “the girl with the big leg”, which made me feel very sensitive and insecure.’
Worst of all, doctors had no clue what was wrong with her.
It was only in 1987 that she was diagnosed with lymphoedema – a defect in the body’s lymphatic system.
This is a network of vessels and glands distributed throughout the body. Its major functions are helping to fight infection and drain excess fluid from tissues.
For lymphoedema patients, the lymphatic system doesn’t work properly to drain lymph fluid from the limbs, so it gathers and causes swelling.
Ms Smith was relieved to finally be diagnosed – only to be told the condition is incurable.
She said: ‘I had a lot of incorrect diagnoses before eventually spotting a young ballerina who had the same condition of me in a newspaper.
‘After that it was like hitting my head against a brick wall, all doctors would say was that my condition was incurable.
‘It got to the point where they didn’t make garments big enough for me so all I could wear was maxi dresses.’
Lymphoedema is incurable but wearing special compression garments and having liposuction to remove the excess lymph fluid can help some patients.
This operation is not usually covered by health services or insurance and so people must pay for it privately.
Through her own research, Ms Smith discovered the work of Dr Young Ki Shim, a lymphoedema specialist working in Seoul, South Korea.
He treats patients using stem cell treatment to kickstart their lymphatic system, so it starts working to drain fluid from their ballooning limbs.
Doctors from the Odense University Hospital in Denmark also reviewed the literature on stem cell treatment for patients with lymphoedema and found it to be effective.
Then, they tried the technique on a patient left with lymphoedema after breast cancer.
In a study published recently in the journal Stem Cells Translational Medicine they found she greatly benefitted and said the this could change how patients are treated.
‘Last year I found out about the work of Dr Shim and his stem cell based treatment, he told me he could help me which was a pivotal moment in my life,’ Ms Smith said.
The treatment cost $20,000 (£15,216) including flights to and from Seoul and so she began fundraising immediately.
Two years later, she flew to South Korea, where Dr Shim took stem cells from her stomach and injected them into her leg.
He also extracted 30 pints of lymphatic fluid from her leg through liposuction.
Her huge leg meant Ms Smith’s confidence plummeted and she said it prevented her having a romantic relationship. She is pictured in the 1990s
Over the years, she endured cruel taunts and was dubbed ‘the girl with the big leg’. She is pictured at her graduation before her limb ballooned in size
After the operation, Ms Smith is delighted that her leg is slimmer and she is finally able to bend her knee for the first time in years.
Ms Smith said: ‘Dr Shim promised he would be able to reduce the size of my leg down by 80 per cent and it looks like it’s happening, it’s already half the size it was before.
‘In the past I couldn’t even bend my knee, when I walked I used to have to shuffle my leg across the ground, now I’m relearning to walk around my backyard. It’s incredible.
She had to save for two years to afford the $20,000 (£15,216) treatment with Dr Shim
‘I feel like I have a new lease on life and that anything is possible, it feels like a miracle happened to me.’
Now, she will need monthly injections to ensure the swelling in her leg continues to reduce, each treatment will cost more than $800 (£600).
She is still raising money to help cover the remaining $11,000 (£8,500) from her treatment in Korea.
Ms Smith said: ‘Currently, I’m recovering at home, I require monthly injections of medication to stop the stem cells from being rejected and to keep them alive.
‘The drugs for the injections are not approved by the FDA so I’ve run into another wall finding a doctor who is willing to do the injections.
‘My leg looks around the size it was twenty years ago, it seemed to be getting smaller and smaller every week, which is great as it’s already giving me a much better quality of life.
‘Without the monthly injections I do fear the swelling is coming back but I’m hopeful that someday I will finally get to be a normal person again soon and I can’t wait.’
Lymphoedema is believed to affect more than 121,000 people in the US and 200,000 people in the UK.
Patricia Egan, CEO of the National Lymphoedema Network (NLN), said: ‘It’s an under-recognised disease, which takes place when there is damage to the lymphatic system, which can be triggered by genetic or hereditary causes, trauma or cancer.
‘The most common symptom is to have swelling that can occur in the legs, arms, hands, neck and face.
Now, she says the treatment has given her a ‘new lease of life’ as she is walking aroung her backyard once more
‘It’s a swelling that doesn’t go away, but the quicker a person can get a diagnosis the better if untreated it can lead to serious infections, amputation and even death.’
She continued: ‘There are a lot of exciting developments being worked on in the pharmaceutical world.
‘Dr Shim is also held in very high regarded in this field too.
‘If you have believed you have lymphoedema it’s a situation where you need to have a lot of motivation and initiative to find the answers you seek but there is help out there.’
Currently, the NLN are working to change legislation so that health insurance companies will cover costs for lymphoedema patients who need regular compression garments and hospital treatment.
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